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contracting PANDAS or variant in late teen or adult age


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Hello all,

A newcommer to the list (all the way from Finland), I am hungry for information.

 

Are there patients/parents of patients who developed PANDAS or its variants in late teens or as adults?

How were they treated and with what long term results.

 

Some background info.

Sandra, now almost 20 developed it after Influensa A and Mycoplasma Pneomonaea at 15, her main symptoms being great difficulty to concentrate, involuntary movements (of chorea-athetosis nature), vocal tics, irritability, slight hair pulling).

We had to struggle through the usual ignorance, lack of interest and politics and wrong diagnoses, including TS, sudden Aspberger 15, a long list and wide spectrum of mental ilnesses, what not. No other case is known in Finland.

She was finally diagnozed by an immuno-neurologist, an old and close childhood friend, working in Israel and treated in Finland by the only one who took the issue seriously, at the time the school GP, first with Zeclar and then with Prednisone for a week. It did the trick and she was OK for a yera, until a relapse after respiratory infection. At this point neitehr short nor long course of Prednisone helped, but a later (took that long to fight to get it) IVIG was effective. For inter hospital "administrative mismanagement", maintenance was not continued as prescribed and after 4 good months she had a repalse. After pussint huge pressure on the system, they started a 2nd IVIG series and steroid pulse therapy but these were discontinued because of administrative issues. Several versions of symptomatic medication resulted in a disaster and had to be stopped before we all were to lose our mind.

 

After 5 years with the condition, 4 of which of pure suffering, mostly for Sandra but also for the rest of the family, we ended up in the hands of the rehabilitation dept and psychiatry dept in the hospital (no neurologist is interested any longer) and I am desperate to supply them with case histories of late teen and adult cases which were cured or significantly improved following immuno-medical treatment, as there is some chance they may still listen! Else, an intelligent and tallented young woman could get shelved as an invalid on a minimal subsistance pension, which is the easiest thing for the system to do as it is not meant to deal with rare and demanding cases. The condition not being officially listed, the private insurance company refuses to finance anything related to it.

 

Seeing what immuno-medical treatment did in the past, I am fully convinced that there is no reason to give up hope and give in to the system and am determined to find examples of effective therapy, which did succeed.

 

I need information on on medical professionals who have managed to treat and maintain the results and on patients who recovered, if only possible, .

 

Bat-Sheva Myllys

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Hi Bat-Sheva,

 

Welcome to the forum. I am sorry you are going through such a hard time. There are so many helpful people here I am sure they will chime in with more information for you.

 

My children are younger so I am not able to help you with data on late teen and adult cases, but perhaps you could do a phone consult with one of the experienced doctors in the U.S.

 

Do not give up hope! Your child needs you!

 

Debbie

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Hi Bat-sheva,

 

I am sorry about your daughter. I would contact Dr. K (web site listed in previous post). When was the last time she was on a treatment dose of antibiotics? can you find a physician who will let you try a trial of antibiotics for at least 3 weeks? I see that she ws initially on Zeclar (clarithromycin). How did she respond to that? To me, it sounds very suspicios for PANDAS, given that she started with infuenza and mycoplasma pneumo.

 

Colleen

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Here is the link to the study on adults who had Plasma Exchange for strep triggered OCD. Haven't read it recently but I believe the results were very promising.

 

http://www.turkpsikiyatri.com/en/default.a...icle&id=592

 

Lots to learn from this forum. Hopefully you can find enough info, including the study above, to convince a doctor to try one of the

immuno treatments. The key we are finding though, after our own son's experience with Plasma Exchange, is that after the immuno treatment, you have to keep infections away or jump on them immediately and agressively, or as you found, you can lose some or all of the benefit. Good luck to you. Alex

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Welcome!

 

Is your dd on antibiotics now?

 

Once she is treated, it will be important to keep her on abs indefinitely to help prevent another relapse.

 

That is an amazing story. Let us know how things progress.

 

Are you able to travel outside of Finland for treatment?

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Dr Latimer has treated 18 year olds and college kids. Mostly with PEX. I am so sorry for your daughter and your family. One more thing, antivirals may also be an option. I have heard of Herpers encephalitis causing autism in teens and adults. Dr. Goldberg in California has been treating his patience for years on antivirals, for both chronic fatigue syndrome and late stage autism. Apparently recently there was a new discovery stating that a retrovirus in B and T cells could be the cause of autism. I would try PEX and then antivirals and antibiotic treatment as a followup.

 

 

Welcome!

 

Is your dd on antibiotics now?

 

Once she is treated, it will be important to keep her on abs indefinitely to help prevent another relapse.

 

That is an amazing story. Let us know how things progress.

 

Are you able to travel outside of Finland for treatment?

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Hello again.

Heart warming to read your reactions, esp. as I have no one really on the Finnish side to share with in the same sense.

I know Dr K rather well and had corresponded with him and even discussed once on the phone at some point, he was interested and helpful up to the IVIG point, but after its later failure he he got skeptic about her chances to recover. Have tried contacting him later on but got no reply. Prof Muller of Germany, who treated 4 cases with plasmapheresis replied and sent copies of his articles and Dr PAvone was kind and interested. I was hoping to get to Prof Trifiletti (they published together). I still do... Problem is we can no longer travel abroad for treatment. No insurance coverage (it is valid only until she is 20 and they refused to pay for the IVIG on grounds that it was "experimental", so we had to fight the public system to get it done. Long story.) and no other way to finance with the effect of the recession and the loss of income I face due to the need to intensively take care of her for the past 5 years. Well, I am sure the econoly will reover and hope Sandra will do too.

I would love to get the particulars of Dr Latimer and the most recent ones of Prof Trifiletti, and contact.

Thins is, I tried to get to Prof Abramsky in Israel, who is a globally prominent immunoneurologist and our diagnosing Dr firend's close friend and colleague. He did review Sandra's data and discussed with Dr Milo, and eevn wrote to me and had some ideas regarding immunomodultory treatment. The problem was that no Finnish MD with the possibility to carry those out dared, e.g. the leading neurologist in Helsinki who did administer the IVIG said he was not going to do plasmapheresis or prescribe RITUXIMAB or long term steroids because he did not have enough data, but on the other hand, he was not going to contact prof Abramsky to consult him on the reasons for these recomendations (e.g. case histories) either, and so we got stuck.

I even tried Susan Swedo, but her stuff did not warm to us. We got an answer saying that Sandra was too old and that they were only interested in small kids who had strep. I.e. they were not interested in some patient wellbeing but in their research alone.

 

My hope now is to get these 2 new doctors (the rehab and the psychiatrist) we managed to get involved interested in helping get more info on the immunotherapy aspect and do what will be considered safe enough to try, instead of classifying her "a lost case" and trying to stick onto her some more psychiatric diagnosis and neuroleptic medication.

I think that there is no firm basis to say to the claim that relatively safe immunotherapies should not be tried neither because of her age nor because of the time this has been going on, just as much as we have not yet seen enough scientific literature to support the approach, besides the Turkish cases, of which I read (do not think that any other MD involved had but for the GP, who has been supporting me in this at her free time) and Dr Muller's few cases.

 

Thank you in advance for all your help and support!

Bat-Sheva (Sandra and the rest of the family)

 

 

 

 

 

 

Dr Latimer has treated 18 year olds and college kids. Mostly with PEX. I am so sorry for your daughter and your family. One more thing, antivirals may also be an option. I have heard of Herpers encephalitis causing autism in teens and adults. Dr. Goldberg in California has been treating his patience for years on antivirals, for both chronic fatigue syndrome and late stage autism. Apparently recently there was a new discovery stating that a retrovirus in B and T cells could be the cause of autism. I would try PEX and then antivirals and antibiotic treatment as a followup.

 

 

Welcome!

 

Is your dd on antibiotics now?

 

Once she is treated, it will be important to keep her on abs indefinitely to help prevent another relapse.

 

That is an amazing story. Let us know how things progress.

 

Are you able to travel outside of Finland for treatment?

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Are you at least able to get your dd antibiotics? Lots here are on Azithromycin which works to get rid of infections, gets intracellular strep, prevents future strep (and other infections)...but is also anti-inflammatory and immune-modulating.

 

Our immunologist said our dd could safely take it for years. (She's 54 pounds, on 250mg/day). Lots on this forum use it.

 

Also, many on this forum find that Advil (ibuprofen) helps as well.

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  • 7 months later...
Hello all,

A newcommer to the list (all the way from Finland), I am hungry for information.

 

Are there patients/parents of patients who developed PANDAS or its variants in late teens or as adults?

How were they treated and with what long term results.

 

Some background info.

Sandra, now almost 20 developed it after Influensa A and Mycoplasma Pneomonaea at 15, her main symptoms being great difficulty to concentrate, involuntary movements (of chorea-athetosis nature), vocal tics, irritability, slight hair pulling).

We had to struggle through the usual ignorance, lack of interest and politics and wrong diagnoses, including TS, sudden Aspberger 15, a long list and wide spectrum of mental ilnesses, what not. No other case is known in Finland.

She was finally diagnozed by an immuno-neurologist, an old and close childhood friend, working in Israel and treated in Finland by the only one who took the issue seriously, at the time the school GP, first with Zeclar and then with Prednisone for a week. It did the trick and she was OK for a yera, until a relapse after respiratory infection. At this point neitehr short nor long course of Prednisone helped, but a later (took that long to fight to get it) IVIG was effective. For inter hospital "administrative mismanagement", maintenance was not continued as prescribed and after 4 good months she had a repalse. After pussint huge pressure on the system, they started a 2nd IVIG series and steroid pulse therapy but these were discontinued because of administrative issues. Several versions of symptomatic medication resulted in a disaster and had to be stopped before we all were to lose our mind.

 

After 5 years with the condition, 4 of which of pure suffering, mostly for Sandra but also for the rest of the family, we ended up in the hands of the rehabilitation dept and psychiatry dept in the hospital (no neurologist is interested any longer) and I am desperate to supply them with case histories of late teen and adult cases which were cured or significantly improved following immuno-medical treatment, as there is some chance they may still listen! Else, an intelligent and tallented young woman could get shelved as an invalid on a minimal subsistance pension, which is the easiest thing for the system to do as it is not meant to deal with rare and demanding cases. The condition not being officially listed, the private insurance company refuses to finance anything related to it.

 

Seeing what immuno-medical treatment did in the past, I am fully convinced that there is no reason to give up hope and give in to the system and am determined to find examples of effective therapy, which did succeed.

 

I need information on on medical professionals who have managed to treat and maintain the results and on patients who recovered, if only possible, .

 

Bat-Sheva Myllys

 

Hi, My son is a patient of Dr. Trifilletti's and we are just now getting his results in. He also has not only strep, but mycoplasma issues. Have you had the immunoglobulins and subclasses checked as well as the lyme westerblots done? We are using amox now, and I have tested the whole family for co-infection, 1 sister, 1 brother and both of us parents. We will be using colloidal silver and oil of oregano as our prophylactic antibiotics. I am a holistic nutritionist and am hoping to manage this situation without drugs if possible. Just wondering how your daughter was, or if you had learned anything new. Swedo has out a recent study that disputes OCD and such disorders, except for certain subsets, with strep infections.

 

Conclusions: The present study does not support a strong relationship between streptococcal infections and neuropsychiatric syndromes such as obsessive-compulsive disorder and Tourette syndrome. However, it is possible that a weak association (or a stronger association in a small susceptible subpopulation) was not detected due to nondifferential misclassification of exposure and limited statistical power. The data are consistent with previous reports of greater rates of diagnosis of Tourette syndrome or tics in white populations.

 

http://www.neurology.org/cgi/content/abstr...13e3181bd10fdv1

Disappointing to read, as it seems completely at odds with all of the other findings, unless I'm misreading it.

 

Hope you're progressing with your daughter, Cynthia

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Hi - (unless I'm mistaken) this isn't a study by Swedo but came out of University College London. I also seem to remember an earlier thread regarding this study and discussing its shortcomings but can't find it now.....

Edited by dut
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